Hi my CML friends and care takers, just want to add to the BMB's that when I received my first one was two weeks before Xmas that was 1998. If I were to count all of them their would be around 27 to 28 of them. Now that they use all blood to get the results that makes me a happy camper. Blood tests I can't begin to keep count and their was a time I couldn't stand to get one, I remember you had to get one to get married almost kept me from doing that. I was on active duty with the Navy for over a year before they caught up to me and I received all of my shoots at one time, two very sore arms from that. greenie In a message dated 8/11/2015 5:20:55 P.M. Eastern Daylight Time, [email protected] writes:
So sorry you had to go through that. It hurts!!! I had one without any pain killer when I was first dx. It was in the doctors office in my first visit. My next BMA was in a hospital under sedation and my others ones were too. The ones done at Moffitt cancer center were the best. No hip pain later. Marty you are so right about mind set because we are all getting push back and forward My recent blood test was not good and it made me sad. I had been doing so well on ponatinib. My WBC were up 2 points 12 but what worried me most were my Kidney counts. My PCD said I had chronic kidney disease but I have never had those high counts before. It must be the new tki. So I must just hang in until my next test in sept. Blessings all My Motto: Faith and Pills Jeanie 🐟🐟18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center On Aug 10, 2015, at 4:10 PM, Marty Gartenberg <[email protected]_ (mailto:[email protected]) > wrote: Hi Angie, In my long list of my bucket list I have gone through seventeen bone marrow "gathering" expeditions, BMB's or MBA's, to many to count so why not take your pick? But is each one of them they hurt but I had a name for them, A.R.P.I.T.A. (A real pain in the Azz) and so it was in the early days of the A.R.P.I.T.A. But I got through it. By the way there was nothing about having any pain killers only the four syringes of 2% lidocaine, which did nothing. At least they only lasted for several seconds. I think that the longest amount of these needles were probably around 30 or more. And that is still a close friend of mine Skip. Oh by the way he has gone through I think about 30 years or more of CML without even taking and TKI's or any bone marrow transplants. I believe we are looking for a Guiness world book of records. 18's Marty On Wed, Jun 17, 2015 at 8:35 AM, ANGELYN ESDERS <[email protected]_ (mailto:[email protected]) > wrote: Thanks, Marty. I am having no great emotional upheaval over quitting Gleevec. Whatever will be, will be, and everything is a learning experience. It just feels strange after 14+ years. In other news, Monday a new platelet dr. decided to do a BMB. You won't believe this: It took him FOUR tries to get a viable sample. Never had this happen before. Four crunching entries. Sort of like having four BMB's at the same time. Afterwards I was almost in a state of shock and could not stand, nauseous, very stressed. (In Canada we do not get sedation or morphine for this procedure.) It took me 90 minutes to de-stress and had to drive myself home because he had not warned me that he intended to do this and to bring a driver along. There's one doctor who will NOT be doing another BMB on me!! I think he needs a few more lessons in how to do it. Anyway, I am fine....still low platelets. Life goes on..... Angie ____________________________________ From: Marty Gartenberg <[email protected]_ (mailto:[email protected]) > To: [email protected]_ (mailto:[email protected]) Sent: Wednesday, June 17, 2015 7:29 AM Subject: Re: [CMLHope] Stopping Gleevec Hi Angie, You are not thee only one that has stopped your TKI and felt that way. sometimes something that we take as far as any TKI's ends up being a crutch for us and we always seem to worry if this or that will come back to haunt us. It is a normal human response and we worry about it. Angie, since your really feeling better without the Gleevec then you should learn to live your life in the best way that you can. I have seen this many times before. A man that both Zavie and I knew was on Alpha Interferon and suffered immensely from it's horrible side effects. He suffered for many years and when he was finally PCRU everyone told him to stop using it anymore but he still continued still suffering because it had become a crutch for him. He had the same feelings as you now have and after a lot of coaching from everyone he finally stopped it. He has been off of it for many years and no reoccurrence of CML ever came back to him. His system finally "burned out" his CML. Remember that everything in life has a double edged soared. If you do something will it come back to haunt you or if you don't do something will it come back to haunt you?? I just can't live my life that way, and if something does come back then I will deal with it. Remember me telling everyone that Leukemia is both a disease of not only the body but it also poisons the mind. Angie, why not start writing a diary and put everything in there that you have gone through the day? I do it and it lets me reflect about what I could have done better or worse during the day. I call it my frustrations and how to deal with them, and it really works for me as I am sure it will also work for you or anyone else. By the way I see that Giora sent you his response. read it if you haven't as yet. Here is something called "expect the best" Please read it and it will also help you with yourself. One last thing. I am not a doctor but have gone through a lot of things in my life health wise as you already know. Have you ever wondered why I am still alive? I did at one time but maybe it is because I try helping others as a promise that I once made to GOD and also received help myself from others. It is a two way street, or I am the luckiest son of a bitch on this planet ??? 18's, Marty EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET. WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY. EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME... FOCUS... 18's, Marty On Tue, Jun 16, 2015 at 9:02 PM, ANGELYN ESDERS <[email protected]_ (mailto:[email protected]) > wrote: I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months. I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day. I was in the study for 12 years. I feel like it is my safety net between wellness and reoccurrence of CML. I am almost afraid to stop it. I no longer have any side effects from it. Who has stopped Gleevec, and what have you experienced as a result of doing so? Thanking you all for your input... Angie in Canada -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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